Mom's been see-sawing with her congestive heart failure between dehydration and fluid overload for a year. I've learned to recognize it and adjust her meds. Two weeks ago, she was on fluid overload, so I did what the doctor did last time: doubled up on her diuretics for three days. And even though she wasn't "unswollen" (her legs/feet are the first to show), I stopped the doubling. In a day or so, she was "normal." I talked to the doctor shortly after, and he said I did exactly what he would have prescribed. "Good job."

Three or four days later? She was starting to get dehydrated. I waited a day or so to see if she'd stabilize. She didn't. So, for the last seven days, I've cut her diuretic in half. (One day, to only 25%.) I talked to the doctor today, and he said to hold her diuretics 'til Monday and eat bananas and raisins.

I asked, "Do you think mom is ready for Hospice?" He said, "If she's see-sawing back-and-forth so rapidly, she may be." He's having the hospice center he works with call to make an appointment to evaluate mom.

I'm a pragmatist. For myself? If in my right mind? I'd have been on Hospice long ago. When I'm making the decision for mom? It's a completely different story.

Mom has Congestive Heart Failure, mild (not so mild some days) Parkinson's Disease and moderate dementia. She's gotten so she doesn't remember to put one foot in front of the other half the time when I walk her with a gait belt. Or...she doesn't remember to push her walker.

Still? She has some good days. Fortunately, she isn't aware of the shape she's in, and, of course, I never remind her.

12 Answers

Good point, Jeanne. I've thought about whether or not to intercede with hospice at all. I think I will stop at, "She has dementia. She gets confused. Be gentle with her."

It is what it is. I'm not sure what her interpretation of the word would be. She's a lil' country girl. That's also a good point. I think if you asked mom, "Do you want to go the hospital if you get sick? Do you want extraordinary measures taken if you stop breathing?" And some other kinds of questions like these describing the care? She might simply say, "I don't want to die." Who does?

She has never said so in so many words, but I think my mother would not want to know she is dying. When we placed her on hospice care she did not equate it with dying. We told her (when she seemed receptive) that she was very sick and we brought in some extra help for her. The interesting thing is that with all that extra help and her own constitution she did not die, and has been released from hospice. It wasn't her time, and having hospice there did not change that.

What is your mother's current understanding of hospice? Will she consider that it means she is dying? Since she doesn't want to hear that message, would she be receptive to hearing a different description that is also true, but less direct?

I chose the same for my late husband. Lung cancer. The surgery itself almost killed him. Chemo? Retching in a bucket then? (1995) There was no other choice. Heart failure is a bit of a conundrum . . . not quite so, well, for lack of a better word? Obvious.

I've brought her back from the edge twice: once when she first came to live with us when she was over-medicated thanks to once-every-six-month doctor visits and her dementia. The second time in the nursing home when I demanded they hold her diuretics until I'd spoken with her doctor. (They refused to hold them until I made it clear they were in trouble if they didn't.)

To what end, I ask myself. She's since had a 3" x 5" open wound for a couple months waiting for a skin graft. I don't have to tell you how painful the twice daily dressings were for her. Then a painful donor site. Then a broken hip.

Life is hard. Death is harder. I guess . . .

I'm sorry you lost your daughter. I didn't know that. My late husband lost his 2-year-old son to SIDS. We married 15 years later. He never got over it. Ever.

Maggie, for my daughter, I looked at her quality of life. Another round of chemo would kill her. No chemo would kill her. I picked no chemo, so those last two months were high quality, spent with friends and family, and a week at the Outer Banks. If life is not possible anymore, then opt for a celebration of what little is left. Toes in the sand was a whole lot better than retching in a bucket.

Pam, mom always told me, "Don't ever tell me if I'm going to die. I don't want to know." I'm sure she still feels that way. How do you respond to me knowing her wishes? I don't want to short-stop Hospice and yet . . .

I totally agree with everything already stated. You know what's right. Your a smart old broad, and a welcome and wise addition to our community. You give great, no nonsense advice from the heart. Listen to your heart.

A Hospice nurse will talk to her as well as you. The decision is hers, if she can understand the question. Just understand that with Hospice there are no heroics, no trips to the ER to fix anything. No 911 calls, no more MD visits, no additional Rx for anything but comfort.

Maggie, this sounds like my MIL. She was in and out of the hospital because either she couldn't breathe because of the fluid or her sodium level was a mess because of the meds. You're pretty level headed and all. Trust your gut instincts.

Maggie, I don't know if there is a right or wrong thing. We just do what we can moment to moment, knowing that what we do may increase the quality of life a bit. It is all we can try to do. I would have done the same thing as you. As the doctor said, Good job.

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